my youngest (autisitic) daughters Bat Mitzvah
I wrote this right after the Bat Mitzvah. I then made an edited version for my shul, the school I work in and the parents of blee.
This is the whole version
S’s Bat Mitzvah
March 25, 2006
I would like to share with you all aspects of my visit to Massachusetts and S’s Bat Mitzvah.
First of all- unlike as she was at the wedding- she actually recognized me this time! She of course wanted to make sure I was not taking charge again as she has her 2 guys there wrapped around her finger and she would not want any permanent interruption of her current gig. The kids got it made.. 2 doting daddy figures- one actual daddy[Jo] and her daddy like pal for 6 years [my friend L- there waiting on her hand and foot] - made me sorta jealous. I often wonder if she has something goin in survival instincts that we would all envy and aspire to- must take notes! Must take notes!!!!!
I woke her up with a lolly and assured her Mommy was here for a VISIT and for her Bat Mitzvah.
She was really happy to see me and we had a good old time.
L and I amused her with a shadowing game where I followed everything he did. She was practically rolling on the floor in laughter. Plus I made her hard boiled eggs which Jo doesn’t do- he only eats them at Pesach- and she has always had a behavior of- if seeing eggs- HOPING each one will be hard boiled- therefore- opening endless raw eggs and having piles of raw egg on the floor. Needless to say that they is no point in stocking eggs in that house for Jo(I don’t understand why Jo does not want piles of raw egg on the floor?? HMMMMM….) But as I was there- I said get them and hide them really well and I will make them and shell them.
Her comprehension is much improved. I told her at the table that Mommy made hard boiled eggs for her- already with the shells off! She grinned ear to ear. She was probably thinking- if Mommy can send me clothes and shoes and stuff through UPS- why the Heck can’t she send me the shelled Hard Boiled eggs ???? She probably thinks maybe only GIRLS can make them- but as girls then get on her case about all her odd behaviors and her guys are so accommodating- better to stick with the men folk…
(again- thinking here that I should have taken NOTES!!!!!!)
I made a nice Shabbat dinner and she basically ignored it as it was not her choice. She has her own thing- she likes the packaged cold cuts with lots of ketchup- and one can apparently NEVER have enough skinless and boneless sardines in oil. Also she eats romaine and tomatoes with Kens country French dressing- very specifically. The tomatoes have to be separate- duh!!!! Bear in mind all of you- she is on vocational track and the school has been training her to be making food trays in classes and institutional settings… I do not expect the recipients to actually GET any of the tomatoes…..
Well I bought for her 4 outfits and I did not know what she would soil and when. I said to her- Mommy has pretty dresses for your Bat Mitzvah- would you like to see them and pick out what you want??? She thought about it and then said “NO!”
L said “would you like the hard boiled eggs?” She thought and then said “YES!!!!”
After endless eggs and sardines and bottled water-(is this the zone diet I think? LOTS of protein???)
We again asked her about the dresses. After she saw our first choice- she did not even want to look at the others. Bichika and I spent many hours on line and phone choosing it. It is emerald green satin with a black overlay mesh patterned with diamond shape and in each corner of the diamond is a sparkly rhinestone. And it is empire waist and had a black velvet bow. It came with a velvet jacket but I instead matched it with a black lace shrug (as I figured the heat would be on in the shul and she might take off the velvet jacket) and bought a starburst “diamond” ( yeah, they were real diamonds…..LOL) brooch to put at the shrug tie to help secure her girl tallis. She was appropriately mesmerized. She did not need the second back up- rose colored stretch lace top and black jersey skirt with pearls and lace trim until she was home. She wore cream tights- the silvery grey wedding Mary Janes- and on a silver chain she allowed us- which was a miracle- something Mom had passed to me that was Dad’s- as that way he was “up on the Bima” with her. She rarely likes things around her neck but you know my Dad- he had a strong will and he let her tolerate it from up there. Grin Also she amazingly tolerated wearing my wedding hat-kippah which was also green- I had bought a plain black “teardrop shape” girl hard shell kippah and decorated it to match my mother of the bride gown so this was a similar color and she wore it.
I had a Shabbas watch that she always wanted- and I told her it was S’s now and she can wear it on special times and for Shabbos. I told her Mommy’s Shabbos watch is S’s Shabbos and special watch now because now S is Bat Mitzvah!
I also heard L ask her Friday night- S- what is going to happen tomorrow? She said-
“MY BAT MITZVAH!!!!” This has been talked about and trained for so long- she understands it is like HER wedding…. She had total comprehension that this was special and significant and her day and a once in a lifetime event and that she was queen for this day and all the world was hers…..
Standing on the Bima- wow- she giggled the whole time and her whole persona was like a queen.
The shul was packed. All the congregation was there. The Hebrew school was there. Most of her workers were there. Her case manager was there. Her director of her day program for autism was there. Her after school program was there. Her other (male) favorite worker of long standing-M was there. Even though M now works full time elsewhere, he still keeps a few respite hours with her as she tends to bond with the guys… (again gals- are ya taking NOTES???)
On the bima was L, Me, Jo, S and the director of the Hebrew chool.
Bichika and blee were on the first row. L whispered to me- don’t look at Bichika!!! Poor thing was crying non- stop and L and I were struggling not to “catch the wave”. It’s like yawning you know-contagious- especially when it is something we have been working toward for so very long.
The rabbi was very kind and patient.
S was on mild tranquilizers- just enough to control any behaviors that might be destructive or abusive- but all she did was giggle non stop. She was the center of attention and she Knew it. Every prayer that was said- she mouthed. When she was called up to have her aliyah- her classmates came up to help- she heard them saying it so she only mouthed all but the last word of each blessing. I do not think that the congregants could hear her. The rabbi helped her touch the torah and she gurgled in ecstasy! Like she knew this was a special honor to be touching the torah on the actual BIMA!
We finished a book and when the rabbi said Chazak Chazak- she repeated Chazak Chazak!!!!
Jo made a beautiful and eloquent, wonderful dvar torah.
It brought together the double parsha and connected the making of the Mishkan(tabernacle) with all the people both at the shul and in her various programs as they make for her a safe tabernacle. He referenced lots of Hebrew and explained roots in common and was on the level that would best any Rabbi anywhere.
Then it was my turn. I immediately pointed out that Jo was a tough act to follow…
I focused on how the parshas emphasized the need for diverse material- gold, silver, copper, fabric and how all of the materials were equally needed to make the Mishkan. I referenced that men and women of open will and heart were ASKED to contribute to its building, not commanded. I mentioned how throughout Torah, the value of each individual is pointed out. How G-d sees us all as perfect and however imperfect we are- we are all needed and perfect and of exquisite value in our own right. I said in our world S may seem imperfect but in G-d’s eyes she was perfect. I told them that S was mouthing the prayers next to me and that others could not hear her but I knew G-d heard her.
I told them how she takes things in. I told them of the time that she was 3 and came out with the entire Eliyahu Hanavi- but just not at any time when we expected to hear it. I wanted the teachers to know that she did learn the Hebrew prayers that they taught her there even if they could not hear it.
I thanked Jo and L for their endless patience with her and Bichika for being her big sister and all the people in her world who help her get through the day in a world that really seems odd to HER and with all its curious restrictions that do not match what she would consider normal.
The second grade class has been with her for 3 years and they came up and said the shema hoping she would say it with her but all she did was giggle. So in my chance to speak- I brought her to the microphone and I chanted “Shema” … I paused and looked at her and she put her face right up the microphone and said :
“Yisroel Adonai Elohenu Adonai Echad!”
They all clapped and laughed .
Bichika came up and did the Haftorah for S.
She did a wonderful Job.
blee held up the torah.
S did not want to dress the torah. She never was into dressing dolls either…
So it was true to form….
We had a kiddush and luncheon for her downstairs.
But , on our way to it…. after we came down from the bima- we were stopped by her paparazzi!
Workers came up and were snapping pics! I told them that please send me copies! They explained that this has been the focus of much conversation in all her programs. They were all eagerly awaiting this day and they wanted to post pics in their various walls of success. It was a day they have been waiting for and they were not even Jewish.
I have left something out-
Her Hebrew school classmates had gotten together and raised money for her own tallis. There is a lady in the shul who makes girl tallises. They presented it to her and they showed everyone how her name was in English and Hebrew and I saw the décor on the white velvet cover- I saw the décor on the silk tallis. I was amazed.
Then when I went to the luncheon- I saw the décor.
It was mainly one thing- butterflies. They matched the décor to the tallis.
As you all may know- butterflies was something my mom loved. She used to collect pins of them and just loved them. This was why- when I made the unveiling weekend- I included the trip to Butterfly World in the day.
Well what I wanted to know was how that came about.
So we tracked down someone who knew the story.
The woman who made the tallis was someone who lost her husband to cancer a year ago. She was pondering what to use as her theme that S might relate to. All of a sudden into her head came the image of a butterfly. So she went with that. And then the whole room was filled with them.
Table decorations made by the Hebrew school kids of butterflies and Torahs.
It was beautiful.
Then some tables- with Israeli folk dancers cut out of plywood and painted. They looked- I promise you- like the costumes Mom used to make for the Habonim Dance troupe. I said- where did these came from? (I mean these looked high level- not something kids made…)
They said- well last Shabbat they had some Israeli teenagers visiting and they made a kiddush for them. For some reason- at the last minute, they decided to leave a few of then scattered around on some of the tables.
We had a lovely cake (chocolate with white frosting) with a picture of the Torah and S’s name on it. The kids had a table for her. On it were presents (like puzzles and toys) and maybe 50 hand made cards from all of the Hebrew school. People all ages came up and told me how much they liked S and older people told me how happy and significant it was that this project was done in their community and in their Temple and how much they were moved by the experience, by how much they learned from it. When the 2nd grade kids came over- I thanked them for teaching and helping S with all her Jewish work- I said you were all such good helpers with her and I really appreciate it! They all nodded very solemnly.
The Franciscan nuns who were our friends and neighbors came to the service also- I thanked them very much.
Bichikas and blee's friend eternal cow who is wonderful (I am “adopting” her as another daughter- she actually E-MAILS me!!!!) and she attempted to video tape it. But Jo did not have the right tapes for the camcorder- I mean this is not his area of expertise. But I reassured her- most Bat Mitzvahs are not videotaped – only the Reform even allow it I think. Even the picture taking in the shul is not in Jo’s and my frame of reference. With Bichikas’s Bat Mitzvah- we had a fake picture taken the day before on the dry run…
But there will be pictures and when they come to me- I will send some out to all of you.
We had to get home to make a “Third meal” for my Orthodox friend who came all the way from Crown Heights to wish us well. (Well she was not able to actually enter the Reform shul as her observance would forbid doing so.) I had a lovely visit with her. S changed into outfit number two but collapsed shortly after sticking her fingers in the frosting of her cake with the Torah picture on it but before she could deal with the presents. Well this way she can drag out her celebration- open one or two things a day. She tends to do that with birthdays also. Savoring each moment. Again- in all seriousness- maybe we should take notes?
It was hard leaving her- After Havdalah I had to go back with the kids to Waltham as I was departing from Boston. I was crying so much that eternalcow- my new “adopted” daughter( I don’t care that she has parents- they have to share her… : ) offered to do Reiki on me.(Which she does- I mean is this cool or what?) As there was not much more kosher Chianti left- I said yes. It did calm me down enough o say goodbye to the sleeping S and the guys there…
I did get to see Bischikas friend K- for those of you at the wedding- the gal in the tux- as she was my ride back to the airport. She is a doll.
So now it is back to the grind.
For those who sent gifts, I will send you a real thank you note soon.
But I did not want anyone to wait to hear how it went. I wanted to write while it was fresh in my mind and before I am back to the grindstone. Its hi ho hi ho its back to work I go. This is how I spent my spring vacation folks.
Watching something that everyone told me was against the odds: my moderate to severely autistic daughter officially join our community and become Bat Mitzvah. Could there be anything sweeter?
Love to you all-
B